Ventilator

[Guest guest]

Hey, guys. It's the middle of the night here in Mississippi and my wife and

I are discussing the virtues of attempting the seven hour drive to Atlanta

to ish Rite to see Dr. Schoffner and pals. Mito gave us unmitigated

hell this past weekend - seizures, fevers, you name it we had it.

Essentially we had everything but sleep.

Anyway, we have been thru a good bit with Kennedy and have reached a

peaceful acceptance that she is sick, she is dying, and we can do everything

we can but no magic bullet is going to drop out of the sky. We hate to put

her thru another episode of vampirism (our word for the blood samples),

anesthesia for biopsies, etc. Especially if at the end of all this we get

an assessment of " yep, she has mito. "

But here's my dilemma. I watched a TV show on a father giving away his

daughter and stayed up all night squawling like a big sissy. You see, it's

not losing Kennedy that I'm so afraid of. It's the other girls getting

married and asking Ann and I about children. Oh, Lord, what do we tell

them? We don't know how this disease finds it's way thru the generations,

what their chances are of being carriers, anything. I don't have a lot of

heart left and just can't stand the thought of not doing all we can do to

learn enough about Kennedy to pass it along to the other girls later.

So, for you guys who visited ish Rite, did you find out anything that

helped, or at least the facts for similar discussions to the one that I'm

afraid of?

Also, please share with me the logistical action about your visits - the

agenda, if you can call it that. Two days, a week? Blood, skin, muscle,

etc.? What sort of tests? How long for results? Just a general

expectation of the action?

Last question..................who's going to the conference June 1? Any

mito c3 guys going?

Hairston

Kennedy's Dad

Mito C3, vent, g-tube, the works

To be painfully direct, we have been thru so much with Kennedy that we have

given up hope